Article No. 451
4 August 2021
Following on swiftly from Article No. 450 about the current babble of names and need to rename of aHUS, aHUS alliance Global Action has been looking for information about the National Kidney Foundation initiative to rename our rare disease which we briefly mentioned.
It is a challenge to do as there is very little to be found on NKF’s website where it would be expected that a full account of what is happening would be found. Nothing prominent on landing pages and nothing from basic site searches*.
NKF certainly have not communicated anything to the aHUS communities that it is known about so something is happening about us without us.
It is disappointing that something like this should be such a challenge for patients to get some awareness.
There is some information on the social media, and one article with the image shown below.
It is an international initiative with a group of predominantly nephrologists but also some within other professional disciplines. Many of the participants names are well known.
The groups’ aim is to “provide a road map” in preparation for changing nomenclature.
There are four working groups designed around four pillars which effectively are:
-History and evolution of current names
-Articulating the rational for change of names
-Highlight obstacles to change and strategies to overcome them
– Identifying potential changes to names
The four working groups in the NKF initiative to update aHUS nomenclature. (Figure from announcement by WUSTL, Div of Nephrology)
There are Co-chairs for each of the four pillar groups as well as named members of each. Eventually, as there is no timeline known for this initiative, there will be an “expert opinion” produced.
Then the “fun” should be begin. Although not quite a project like a country changing from “right hand driving to left hand , or vice versa” the practicalities are significant.
Across the medical world.
Not least on the patients’ communities.
Communities plural because in addition to aHUS patients there are cohorts of patients in the HUS, Lupus, APS, HELLP, TTP, Leukemia, and many more disease communities who will be affected by this, but unlike the aHUS community, where our nomenclature has been discussed for years, they have little, if any, awareness.
Ideally there should have been a fifth pillar group for those patient communities. Not least to address the communication deficit it has begun with.
In many respects aHUS alliance Global Action has been visionary on this issue and has openly communicated its views on this topic. Providing a communication “surplus” already .Patients’ opinions on the subject have been important to us.
* aHUS Global Action has written to the National Kidney Foundation for more information on this initiative. No response received from them to date. Having waited 9 weeks with no response, Global Action has written again to the National Kidney Foundation. Now nine months and no response, clearly no interest in the aHUS patients voice.